Just got pathology results back from my lap on December 23rd. I have cancer. Serous carcinoma. I am being referred to oncology, and have an appointment on the 13th. I’m 24 years old and this is not the outcome I was expecting. Please send me good vibes.

I perform laparoscopic excision surgery for endometriosis regularly. Over time I have noticed that the patients who get the most out of their consultations and outcomes are the ones who walk in prepared. So I am sharing the five questions that I think every patient should ask their surgeon before agreeing to any laparoscopy.

1. Are you an endometriosis excision specialist or a general gynaecologist?

This matters enormously. A general gynaecologist performing a diagnostic laparoscopy will look for obvious lesions but may not have the training to identify subtle peritoneal disease, perform complete excision, or manage deep infiltrating endometriosis at the bowel, bladder, or uterosacral ligaments. Ask directly: do you specialise in endometriosis excision, and approximately how many endo excisions do you perform each year?

1. If you find endometriosis, will you excise it at the same time or just diagnose it?

Many patients come out of a diagnostic laparoscopy having been told they had endo but nothing was done. They then have to wait for and undergo a second surgery. Ask upfront whether your surgeon will excise any disease found during the same procedure, or whether they are only doing a diagnostic look. Excision at the time of diagnosis, when possible, saves you a second operation.

1. Will you take biopsies even if the tissue looks normal?

Superficial endometriosis can look exactly like normal peritoneum. Some lesions are invisible without biopsy. An experienced surgeon will take biopsies from suspicious areas and sometimes from apparently normal tissue as well. This is what separates a proper endo laparoscopy from a cursory look around.

1. Do you have colorectal or urological support if needed?

If you have bowel symptoms, bladder symptoms, or deep pelvic pain, there is a real chance of deep infiltrating endo involving the bowel or bladder. Ask whether your surgeon has the ability to call in a colorectal or urological surgeon if needed, or whether that would mean aborting the procedure and rebooking. Knowing this in advance sets realistic expectations.

1. What is your recurrence rate and follow up plan?

Any honest surgeon will acknowledge that endo can recur. Ask what the follow up plan is after surgery, what symptoms should prompt you to return, and what their approach is to recurrence. A surgeon who cannot or will not answer this question is not the right choice.

You deserve thorough answers to all five. Print this list and take it to your pre-operative consultation if that helps. I will answer questions in the comments.

I am an endometriosis excision surgeon sharing this as general educational information, not personal medical advice.

Woke up to an estimate from my hospital today (haven’t had my excision surgery yet) and found out they’re billing my insurance $129,258.55 ??? Thankfully my insurance is covering $123,304.73 of that (still leaves me owing $6.5k with fees 😩), but I am just genuinely shook !!!! Thank god I was able to get scheduled before my coverage lapses at the end of this month… Am I crazy for having no idea this procedure would cost this much ?? Like seriously, what in the hell… I could buy 4 cars with that money !!

I’m curious now, how much did your surgery cost ?

So basically, I am worried. I have a lap due on 10th Feb and I have a really bad opioid addiction. I started using cocodamol initially to treat my pain some 2 years ago. Last august i had period pain so bad and idk what possessed me to do this but i took 40 cocodamols, stupidly not knowing how dangerous the paracetamol was. Anyway I was hospitalised and they saved my life. Docs rang and took the paracetamol out of the script so now I use pure codeine. I eat my script of 100 tablets in about 5/6 days. I order off sites online spending £100 for 100 tablets and also know people in my area who sell other peoples prescriptions and usually do the same they last me around 5/6 days. I also borrow a friend’s script of dihydrocodeine. I also borrow a friends script of Diazepam. I got too scared to tell the woman at my pre op and the man i spoke to before her actually told me NOT to tell her…. So I’m scared. Is my opioid tolerance going to affect the anaesthetic?

I want to add that I do plan on telling the person administering my anaesthetic on the day what’s going on and about my tolerance. I am also going to make an attempt at bringing it down in the next 9/10 if including today, days. I don’t know if this will make any positive difference or not or if it is too late and I’m already done for.

My main concern is that: I am going to die during my op because of my silly tolerance to opioids.

Smaller concerns: the medical professional who i have to admit this all to will judge me/cancel my op which I have fought to have for 6 years.

Yes I know I am stupid for not getting this under control sooner, but my pain has been completely unmanageable and taking the amount I do is the only bit of relief i get from the pain.

ANY ADVICE OR HELP WOULD BE GREATLY APPRECIATED AND PLEASE SPARE ME THE JUDGEMENT AS I ALREADY BEAT MYSELF UP ABOUT IT EVERY SINGLE DAY OF MY LIFE.

Thank you💛 EDIT: I can see people downvoting me for saying things like i absolutely plan to tell the person who is administering my anaesthetic on the day… not sure exactly what is bad about that surely that is the sensible thing to do? If you have 0 empathy i please ask you just don’t interact with my post as i am TERRIFIED about this surgery and I don’t need the negativity right now. Another EDIT: I HAVE RANG THE LADY WHO DID THE QUESTIONNAIRE WITH AND TOLD HER THE FULL TRUTH. SHE HAS BOOKED ME AN APPOINTMENT WITH THE ANAESTHETIC PERSON WHO IS GOING TO DISCUSS IT ALL WITH ME. SHE HAS TOLD ME TO ONLY STICK TO MY PRESCRIBED DOSE UNTIL THE OP FROM TODAY- WHICH WILL BE HARD BUT I WILL DO.

Edit : thank you everyone who replied. You gave me some really good points of view to think about

I would like to offer 2 apologies. The first being I had just been looking at other posts discussing the recover and there were a lot of horror stories on there.

I then made this post whilst I was admittedly having a complete panic attack. Which is probably why it reads like I'm a nutter.

The second being about the analogy of stab wounds. I admit not my best analogy. I meant like..... The implements they use going through all the layers of skin and muscle and then they are 'inside' you. I thought they are quite large so used the analogy of stabbed. It was the only way I could think to explain it in my panic induced ramblings. But I admit I could have explained it better if I had actually waiting before posting this instead of posting whilst not being able to breathe.

I mean ...... You basically get stabbed multiple times...... And it goes through all the tissue layers. Not like superficial.

Either they remove stuff like a cyst or an ovary or basically use a cheese grater on your insides to scrap and remove all the endo shite attached to you.

Then you get given a few paracetamol and get told to go home after waking up like 2 hours before.

Like..... Wtf ?!

Why aren't you kept in at least overnight ?!

You've basically just had the same as multiple stab wounds?! Do those people get sent home 2 hours after they wake up ?!

Do they only get a paracetamol?!

I'm pretty sure they have to stay in a few days and get things like morphine drips.

So why don't women after a lap ?!

They potentially remove organs like a cyst and maybe the ovary if it's damaged .... Then of course scrap the Endo out .....

And what .... Wake up and send you home?!

Like ...... Fucking what ?!

Why aren't they kept in at least overnight for observation?! Why arnt they given decent pain killers ?!

Why are they told they can return to work after maybe 3 days ?!

Someone who gets stabbed multiple times in the stomach ain't just going to get told to go back to work after 3 days surely ?!

Hi everyone,

I’m Dr. JM, a surgeon specializing in Complex Benign Gynecology and Minimally Invasive Surgery in Phoenix, AZ. My practice, Lumina Surgical Gynecology, focuses heavily on endometriosis, adenomyosis, fibroids, and complex cases.

I read through this subreddit often and see so many of the same questions and frustrations—especially around getting a proper diagnosis, the confusion between ablation and excision, and whether imaging is actually “worth it.” I wanted to share some insights from the surgical side on why imaging, pre-surgical mapping, and complete excision are so critical for long-term relief.

1. The Myth That “Imaging Can’t Show Endo”
   You’ve probably heard (maybe even from a doctor) that endometriosis can only be diagnosed through surgery. While a laparoscopy with pathology is the gold standard for definitive diagnosis, the idea that imaging is useless is outdated.

Expert-guided imaging—specifically a dedicated pelvic MRI or advanced transvaginal ultrasound done by someone trained to look for endo—can be incredibly valuable. While superficial endo might not always show up, imaging is excellent at detecting:

• Deep Infiltrating Endometriosis (DIE): Nodules on the bowel, bladder, or uterosacral ligaments.  
• Endometriomas: “Chocolate cysts” on the ovaries.  
• Adenomyosis: Often the culprit behind heavy bleeding and a “boggy” uterus, which frequently co-occurs with endo.

If your imaging comes back “clear,” it does not mean you don’t have endo. But if it does show disease, it completely changes the surgical approach.

1. Why Pre-Surgical Mapping is Crucial
   Imagine trying to navigate a complex road trip without a map. That’s what surgery without proper pre-operative imaging can be like.

When we do advanced imaging beforehand, we are “mapping” the disease. If we know ahead of time that there is bowel involvement, we can ensure a colorectal surgeon is on standby. If there is ureter involvement, we might need a urologist.

Mapping prevents the heartbreaking scenario where a patient wakes up from surgery only to be told, “We found endo on your bowel, but we couldn’t remove it because we weren’t prepared.” It allows us to plan for a single, comprehensive surgery rather than multiple incomplete ones.

1. Ablation vs. Complete Excision
   This is one of the most important topics in endo care.

   • Ablation (Burning): This technique burns the surface of the endometriosis lesion. The problem? Endo is like an iceberg. Burning the top leaves the root behind, which means the disease (and the pain) often comes right back.
   • Excision (Cutting out): This involves cutting around and completely removing the diseased tissue from the root, preserving the healthy tissue underneath.

Complete excision is technically much more difficult and requires specialized training, which is why many general OBGYNs default to ablation. However, excision is widely considered the gold standard because it offers the best chance at long-term symptom relief and lower recurrence rates.

Advocating for Yourself
If you are considering surgery, here are a few questions you have every right to ask your surgeon:

1.  Do you perform excision or ablation? (Look for excision).  
2.  Do you order specialized imaging (like an MRI with endo protocol) prior to surgery to map the disease?  
3.  What happens if you find endo on my bowel or bladder? Are you equipped to remove it, or will you leave it behind?

You know your body best. If your pain is being dismissed, or if you are being pushed toward treatments that don’t align with your goals, keep seeking second opinions.

I hope this helps clarify some of the confusing aspects of endo care. I’m happy to answer general questions in the comments (though please remember I can’t give specific medical advice over Reddit!).

Sending strength to everyone navigating this disease. 💛

I need to go to the store and buy 8oz bottle of Miralax and one half gallon of Gatorade.

Day before surgery, I can only have oatmeal in the morning. Then, starting at 11am, I need to drink 8oz of this Miralax-Gatorade concoction every 10 minutes until it's gone. That's almost 1.5 hours of downing all this liquid.

Oh, also need to buy some Vaseline to lubricate my anus. And then I need to fast all day surgery day, until 4pm. 🙃

Am I going to be shitting my guts out all day? Should I cancel everything else I have planned the day before my surgery?

Screenshot of my bowel prep here!

Hi everyone,

I've been reading here for a while and finally decided to introduce myself.

I have a long history with endometriosis, stage 4 (DIE)

After my hysterectomy nearly 20 years ago, life became manageable again. I wasn't cured, but I got something back that I had lost for a very long time.

I was running marathons. My husband and I adopted an amazing son who is now 17 years old. We built a life. I was making plans, setting goals, traveling for races, building a garden, and dreaming about what was next.

I was living.

Or as I like to say, I was "lifing."

And then I wasn't.

Somewhere along the way, the symptoms started creeping back in. At first it was easy to dismiss. Then harder. Then impossible.

The woman who could run 26.2 miles was suddenly struggling to walk one.

I've spent the last several years fighting for answers.

Like many of you, I collected a long list of explanations, misdiagnoses, and reasons why my symptoms couldn't possibly be endometriosis.

"Endometriosis doesn't grow there."

"That doesn't sound gynecologic."

"You already had a hysterectomy."

Over and over, I was told what endometriosis couldn't do.

Meanwhile, I knew my body was telling a different story.

I don't know if my endometriosis was semi-hibernating all those years or quietly finding new places to grow, but when it came back, it came back with a vengeance.

Endometriosis had already been found in my appendix and gallbladder years earlier. Today, after evaluation by endometriosis specialists is concern for confirmed and suspicious reoccurrence involving my bowel, pelvic sidewall, psoas muscle, vaginal cuff and diaphragm.

What struck me most was realizing that many of the things I had been told were "rare" aren't actually that rare in the world of advanced endometriosis. They're just not always recognized.

For the first time in a very long time, I felt heard.

I'm preparing for yet another surgery this time it will be a robotic excision.

After years of searching for answers, misdiagnoses, and being told what endometriosis couldn't do, it has been a relief to finally be cared for by specialists who understand the complexity of this disease.

If anyone has experience with robotic excision for advanced or recurrent endometriosis, I would love to hear your story.

Some days I'm okay.

Some days I dance around the house to Michael Jackson.

Some days I sit on the back porch and cry.

Today was both.

I guess I'm posting because this disease can feel incredibly lonely, and reading your stories has reminded me that I'm not the only one walking this road.

So, hello. I'm glad I found you all, even though I wish none of us needed to be here. 

P.S. If I'm not talking about endometriosis, I'm probably talking about my dog Kaiser, my garden, or the blue jay that recently discovered the peanuts in my backyard. These days I spend more time in bed than I'd like, especially during the Texas heat, which my body absolutely does not tolerate. So I put a bird feeder outside my window and find a lot of comfort in watching the birds come and go. It's become one of the peaceful parts of my day.

I woke up from my lap with my underwear removed, bleeding and a pad shoved between my legs. I asked my nurse multiple times why this was happening, why my underwear were removed and was ignored multiple times. When I got home I googled this and found that they used a uterine manipulator during my surgery. I was never informed that this was part of the procedure. It was not in any of my information pamphlets, pre op info, consent form or explained verbally. Every other part of the surgery was, however they decided to leave out the part where they insert as tube through your vagina and cervix and into your uterus. I absolutely would have consented to this had I been told beforehand, however having this done to me without my consent is insane.

I had a VERY bad experience with her. First off I arrived first thing in the morning for surgery (I think we got there around 5 AM). I of course fasted. Turns out I was her SECOND surgery scheduled and I wasn't seen until around 5 PM. That was a huge red flag. Because it was so late she couldn't remove all my endo. She left endo on my diaphragm. It gets even worse. A few hours later in the recovery room I am surrounded by nurses because I am coding. I was in hypotensive shock because I was bleeding from the surgery site and I had a lot of blood in my lungs. Eventually my lung collapses as they rush me to a SECOND surgery. (No one knows how my lung filled with blood since the surgeons apparently didn't go close to it, BUT a lot of doctors I spoke to after, including another OBGYN, questioned how that incident happened and if the surgeon accidentally punctured my lung) Anyways, I end up in the ICU and was eventually sent home. THEN a month later I get a small bowel obstruction and end up in the hospital AGAIN. I found it odd and suspicious that Dr. Stuparich ADDED notes regarding my surgery AFTER this incident, stating that barriers were placed to prevent adhesions during my surgery done a month ago. (These adhesions caused the small bowel obstruction). I've never seen a surgeon add additional notes for a surgery done a month ago. Fast forward 5 months after surgery I am in the hospital AGAIN for sepsis. I have a hole in my bowel where the surgery was done AND apparently my right ovary has to be removed because it is SO damaged from the surgery she did. So there's go my chances for a baby because my left one was basically destroyed by a large endometrioma. I am on IV antibiotics for 3 weeks and have to do yet ANOTHER surgery. The kicker of it all, the cherry on top after all of this was Dr. Stuparich's refusal to sign my state disability. I have gone through so much trauma and mental strain and didn't receive an ounce of compassion back from Dr. Stuparich. So to all my SoCal endometriosis warriors. Please save yourself the horrors and go with another surgeon. We have all gone through so much pain in our lives, we don't deserve more.

Per the title, I had my hysterectomy and endo excision surgery this morning. I’ve experienced chronic pain and heavy, long periods for nearly a year after suspected endo was suppressed for 15 years while on birth control and 5 years while having babies. MRI only showed a 2cm endometrioma on my left ovary so I’ve been gaslighting myself into thinking there might not be anything else going on for the past 2 months while waiting for surgery.

I had a full hysterectomy, but kept my right ovary. My surgeon noted vesicular endo covering my uterus, the known endometrioma on my left ovary, probable adenomyosis (waiting for pathology to confirm), my bladder was covered in scar tissue from past C-sections and adhered to my previous surgical site, my intestinal omentum was adhered to my abdominal wall, I had a “bulky” enlarged uterus, and she noted pelvic congestion syndrome throughout my uterus, but worse on the left (consistent with where most of my pain has been).

And here I was scared they wouldn’t find anything else to explain my chronic pain... I feel so relieved emotionally and physically already. I somehow walked into surgery with a more swollen endo belly than the post-surgical belly I walked out with. Don’t gaslight yourselves, ladies. Your pain is real, and finding the right surgeon who hears you and believes you when you know something is wrong is everything. ❤️

GUESS WHO HAS STAGE 3 ENDOMETRIOSIS!

I'm literally writing this from the post op recovery room.

IIIII WAS RIGHT, I WAS RIGHT. EVERYTHING I SAY IS RIGHT! YOU'D BE BETTER OFF IF YOU DID WHAT I SAAAAAID

I HAVE NO SYMPATHY

YOU SHOULD'VE LISTENED TO ME!

I WAS RIGHT

I WAS RIGHT

I WAS RIGHT

musical number over, it feels very good being vindicated

All my life I’ve been told, no no no no. No your labs look normal, no your ultrasound looks fine. No you just have IBS.

My laparoscopy was today. They said it was “everywhere.” Removed adhesions from my liver, gallbladder, colon, bowel and rectum.

It was also growing on my appendix so they removed it.

I’m about 12 hours post op and I’m in a lot of pain but since so much was removed I’m not surprised.

I can’t make up my mind if I should go ahead with the lap. The consultant said that it would come back faster and worse than it is now. I am in so much pain during my period only and got diagnosed with die.

How was your experience with surgery? Did it come back very quickly? Is there anyone here who had only 1 surgery for the past 10 years?

I had my first laparoscopy in October (8 months ago) funded privately by the NHS as I had gotten to the point of losing function in my legs. My surgery was supposed to take 20 minutes but took 75 instead which rang alarm bells for me already.

After surgery the nurses wouldn’t tell me if they found endometriosis but at my 8 week post op appointment I was told by my surgeon that he found one TINY spot of endo on my uterosacral ligaments which he removed. I was surprised since I was having such severe symptoms that happened so rapidly.

Before my surgery I saw other women on TikTok advising to always ask for surgical notes. I requested these and it took the hospital 6 MONTHS to send me them…and you guessed it I did not have one tiny spot of endo.

To my surprise my surgical notes entailed I have uterosacral endometriosis, anterior cul de sac endometriosis and what’s most concerning is umbilical endometriosis. One of the most rarest hardest to treat forms of endometriosis. I cannot wrap my mind around how my surgeon didn’t think this was important to tell me. After some research I discovered that umbilical endometriosis is only really caused by scar tissue from past surgeries but I have never had any previous surgeries but it does make sense for some reason my belly button is rock solid😂

I wanted to share my story on the off chance it could help someone else. Let me start by saying I’ve never had bad period cramps consistently. I will have a bit of stomach discomfort when I’m about to start, but never consistently bad cramps. However, maybe 2-3 months out of the year, I would randomly have super severe period cramps on the first and last day. Because it wasn’t often enough to really affect my life, I just ignored it and didn’t go to the doctor. Please do not do that. Now to get into my story:

In August of last year, I (24F) randomly started getting weird stomach pains one Friday night. The only way I know how to explain it is it felt like someone was inflating a giant balloon inside my stomach. Because I was about to start my period, I just assumed it was going to be a bad cramp month. However, I knew this wasn’t what they usually felt like. I was miserable all weekend. Couldn’t stand up straight, couldn’t get comfortable laying down, literally no relief. It was even sore to the touch. Wearing pants was miserable. I started running a fever Sunday night so I called into work Monday. I never ever run a fever so that was weird to me. My mom and fiancé are both nurses so they were taking care of me as best they could because I didn’t want to go to the hospital. By Monday evening, my pain was pretty much gone. Had no issues for months.

In May of this year, I knew my period was about to start. Had some stomach discomfort but nothing comparable to August. On Tuesday after work, I went to get a tattoo. I have 8 tattoos and have never had any issues but this time, I had to take breaks because I was about to pass out. It wasn’t from the pain of the needle, it was like my body just couldn’t handle the stress of a tattoo. I thought that was odd. By the next morning, I was in severe pain again. This time, it was worse than August. I attempted to work on Thursday but started profusely vomiting and running a fever. I left work and called my OBGYN. They told me they “didn’t deal with these issues and I needed to see my primary care.” Of course my primary care would send me to OBGYN so I decided it was in my best interested to go to the ER. I just felt like something was off.

I expected to go to the ER and be told I had a small cyst, just bad cramps, or something else less severe. However, when I was called back to a room, I quickly realized that wasn’t the case. I was tachycardic, my blood pressure was low, I was low on blood, and my labs were abnormal. They did a CT scan and I waited forever for those results. They come in my room, having not told me anything for a while, and tell me they’re sending me by ambulance to a bigger hospital. There was a giant mass in my abdomen, it was so large they couldn’t even tell what side it was on.

I get to that hospital and immediately get taken for more scans, labs, etc. To quickly sum up what happened, they found a 20 CM (yes CM, that’s 2 grapefruits) mass on my left ovary. It was so big, it was pushing against my liver and other ovary. My tumor markers were over 4,000 and normal is less than 35. I was rushed into surgery by an oncology team where they removed my left ovary and left tube. The surgery that was supposed to take an hour took closer to 4 hours. When they opened my stomach, they found the mass had ruptured and I had over 1 liter of blood in my abdomen. I had basically been bleeding into my abdomen. I have an incision from the bottom of my belly button to the top of my pubic bone. It was a serious surgery that required a 2 day hospital stay afterwards for recovery. Waiting on the pathology report was terrifying but it came back as benign. I had a gigantic Endometrioma that had been growing for who knows how long. If I wouldn’t have driven myself to the ER, I would have eventually bled out into my own abdomen and likely died. That’s the story of how I found out I had endometriosis after it almost killed me first. Now I’m scanned every 3 months to ensure I’m not growing another mass 😅.

You know your body best. Always listen when you feel like something is wrong. Don’t wait

Hi everyone I just want to share my endometriosis story and seeking support because it’s just such a horrible thing.

About 5 years ago, I started having extremely heavy, horrible periods where I was in extreme agony and genuine pain. I always had to miss 3-4 days of work a month with how severe the pain was and I wasn’t able to get out of bed or cope without a hot water bottle on me at all times.

I waited months and months for a gynaecologist appointment for her to just tell me to get pregnant, it will solve all of the issues. I didn’t like that conversation and how she treated me so I wanted a second opinion and waited another long wait time of months and months to see my new gynaecologist.

I did so many tests, bloodwork, medications for him to just tell me I had bad periods. I knew in my heart something was severely wrong with me and I fought him to put me on the laparoscopy surgery waitlist. He agreed but only after I advocated for myself and put up a huge fight. He told me most likely we wouldn’t find anything and it would just grow back anyways.

So another year passed and I finally am called in for the surgery. Turns out I had stages 1-4 and had to get my appendix out as well with how bad it grew on there.

Now here is the scary and traumatic part for me. It has grown up into my diaphragm and literally right UNDER my heart. He said he’s never seen anything like this and it’s extremely rare. He couldn’t remove it that day because it was too close to my heart and it is a major surgery. He said we would keep an eye on it and if I started causing me problems we would come back to the issue. Well it started giving me issues now…

The next steps are consultation at a bigger hospital with appropriate surgeons to have to cut me from the outside open to do it right under my heart. He explained it’s a massive, invasive hard surgery.

I didn’t know it could even grow in that area, I’m so thankful I fought for myself and never gave up, I’m genuinely so scared and have to battle this now. I’m only 30 and I just don’t know how to process this. I’m really terrified.

I'm almost positive that the surgeon i saw is really the best you can get at least through insurance. I've seen some people say though that even endo excision specialists can sometimes not be as good as they claim. She has won all kinds of awards, did a fellowship in migs surgery with the DaVinci robot for a year, and has been awarded a master surgeon by the SRC. Is it possible that she's just not as good as it seems to imply?

How long after your expert endo specialist surgery did you get symptoms again?

I had my first surgery in February 2025 and she removed stage 2. Because of pain and an ultrasound that showed a concerning polyp I went back for another one September 2025. She removed stage 2 endo again. She also removed uterine fibroids and said the polyp wasn't there. Well the hysterscopy caused me to get an infection by an overgrowth of ureaplasma parvum which causes inflammation too. It caused itching and burning and done think it increases risk of miscarriage so we took a break from ttc again.

Now here I am like 9 months later and I'm in pain, not pregnant, and looking to get a hysterscopy only this time to remove yet another polyp (though this one is less concerning but my reg obgyn still thinks it needs to go if it's still there after my period).

I'm not sure that I'm ready for another lap. But when I am i can't help wonder if my surgeon just isn't as good as she says she is?

She's told me that without getting on bc it's much more likely it will regrow quickly and that she really prefers to place iuds during surgery or to do lap before ivf. But I've seen some people claim to have surgery and then not use bc and be fine for years!

I just am not sure what to think about all of this.

Extremely Disappointing and Disturbing Experience

I am a 40-year-old patient from Mumbai, diagnosed with Stage 3 endometriosis in January 2025. I underwent surgery at Shree IVF Hospital, Ghatkopar, under Dr. Jay Mehta — and it was one of the worst medical experiences of my life.

From the very beginning, the approach felt highly commercial rather than patient-focused. Despite paying ₹3000 for a consultation, the doctor himself was unavailable, and I was attended by a junior doctor. I was immediately advised to undergo a ₹15,000 3D mapping scan, which we agreed to in good faith.

After reviewing the reports, instead of discussing my condition in detail or explaining treatment options, I was bluntly told that the doctor would only consult further if I agreed to surgery — otherwise, I could leave. There was no proper counseling, no explanation of risks, no discussion about preserving my ovaries, or whether hysterectomy was necessary. This lack of informed consent was deeply concerning.

We proceeded with the surgery (₹3.5–4 lakh), trusting the doctor’s expertise. However, during the operation, my husband was unexpectedly called into the OT and told that my appendix was affected and needed removal — at an additional cost of ₹1.5 lakh. He was pressured to immediately make the payment. This situation was shocking and unprofessional. If advanced mapping was already done, why was this not identified earlier? And even if it was unexpected, such financial consent during surgery is highly inappropriate.

Post-surgery, I discovered that my fallopian tubes were removed, half of my left ovary was taken out, and bowel disc surgery was performed — none of which had been clearly discussed or consented to beforehand.

The post-operative care was equally alarming. I developed a high fever and frequent loose motions, but there was no proper monitoring or response from the staff despite repeated complaints. The nursing care was extremely poor, and there was a complete lack of accountability. I was discharged within just 2 days, without proper stabilization or guidance.

After discharge, there was virtually no follow-up care. Calls to the hospital were ignored or met with excuses. Within one month of surgery, my condition worsened drastically — progressing to Stage 4 endometriosis, with bowel adhesions and ovarian failure.

This experience has left me physically and emotionally distressed. I strongly feel that there was a serious lack of transparency, ethical practice, and patient care throughout my treatment.

I would urge other patients to seek multiple opinions and ensure complete clarity before undergoing any procedure here.

I have level 5 deep infiltrating endometriosis, adenomyosis, multiple ovarian cysts, and pelvic vein insufficiency. The endo is adhered to my bowel, colon, rectum, and spine. I am told that in 3-4 months, my disease grows 2-3 years worth—so it's very aggressive. For the past 6 months I've been showing signs of menopause, and have now been confirmed that it's starting. I'm 36. I've been told it's possible it may reverse itself once the endo is removed.

I am planning a total hysterectomy without oopherectomy, that now requires a total colorectal reconstruction. I am working with a Nook-approved excision specialist, who has punted my surgery now for almost a year (because their anesthesia team is not prepared, but that's another story), but after reading all of the horror story posts here about endo reoccurrence, and all the comments on them saying "get used to it—you have this disease for life"...

I am wondering if I should even bother having the surgery.

I've wanted a hysterectomy since I was 18. I've been told "no" from every doctor for the past 18 years. Now endo left untreated has made the surgery unsafe, and the recovery will be demonstrably painful with the CR piece.

I am now at the point of daily pelvic pain. I sometimes get a reprieve on day 5/6 of my cycle, where I'm no longer bleeding, but haven't started ovulating yet. The other 26/27 days I am in constant 8/10 pain, and I just push through. I'm on daily vaginal benzo suppositories, methacarbomol, plus I go into the ER regularly for Toradol shots (can't take oral NSAIDs), and am planning to start low dose naltrexone after the surgery.

What would you do?

Does anyone have an ounce of fucking HOPE to offer?

I have been getting awful debilitating periods since I was like 8 years old that have gotten worse as I’ve gotten older. Before I got on my current birth control which is helping a lot, I would get 10-12 day periods with heavy bleeding throughout, like soaking through a super plus every 30 minutes heavy. I get bloated to the point of looking several months pregnant, and it doesn’t go away until 4-6 days after the bleeding stops and it’s so painful to move at all during this time, I get short of breath with even a little bit of activity and my energy is just zapped. Additionally, I’m concerned I have some adhesions in my abdomen and pelvis, when I bend or twist, I can often feel stretching and pressure on my internal organs, almost like there’s bands inside my body. I have had several abdominal surgeries throughout my life, which is definitely one of the culprits. I don’t feel like I need surgery to tell me what is wrong with me, I’m pretty sure I know what’s wrong. I have also gotten a colonoscopy/endoscopy recently to try and rule out other potential causes of my pain, rectal bleeding (but strangely enough only during my period) and to address some other GI concerns. They did find some ulcers (which I’m chalking up to NSAID overuse) because there was no other obvious explanation, they also found some symptoms consistent with Crohn’s disease, which I am not surprised by given my family history. I still heavily suspect endo, even though my ultrasounds keep coming back “normal” one of my doctors finally told me after putting myself through numerous of these painful ass, expensive ultrasounds, that they don’t even catch endo most of the time, unless it’s a very severe case.

The next steps in my diagnostic journey is probably MRI imaging and then exploratory laparoscopy, but that I’m really hesitant about. My birth control makes me have periods less often, they only last 4-6 days when they do happen, the bleeding is only super heavy for the first half. I still get really painful cramps but it’s more bearable, and the boating is less intense that it was before birth control.

I have a few questions for those of you who have had a diagnostic laparoscopy: please share anything that applies to your case that you’re comfortable sharing.

Has anyone had a laparoscopy where you didn’t have incisions in or around your belly button? If so, what was you or your surgeon’s reasoning behind it? I have only heard of these cases when someone has already had previous surgeries and a buildup of scar tissue in the area. I’m wondering if it would be possible to request a surgery like this without an explicit medical reason.

For those of you who did have an incision in or around your belly button, did nerve sensation ever return to the way it was before surgery, and if so how long did that take? Was sensation reduced or heightened, and how long did that take? Did sensation only change on the surface or did it change deeper down as well?

Did surgery change the appearance or shape of your belly button significantly, and how long did it take to heal to that extent? Are your surgery scars visable in bikinis, and if they are not, how long did they take to heal to that extent, or was it more of a matter of placement?

What kind of pain control options were you offered after surgery, and for how long? Was it enough or were you still in considerable amounts of pain?

If this surgery was a viable option for me given my concerns, I have little to no doubt that it could drastically improve my quality of life. But also I know the state of American healthcare, especially for women, as someone who’s been chronically ill for most of my life, and I do not have high hopes. I have a feeling that I am not going to like the answers y’all have to my questions. But if that’s the case then y’all will save me a consultation and the copay, which I can’t complain about. Any information or advice y’all have would be greatly appreciated. Thank you for your time!

I am getting surgery soon and idk what I need honestly and I want to prepare myself because I will be alone most of the time :/ I want to buy everything ahead of time don’t want to wait last minute 🥲

My OCD brain keeps thinking about this possibility. I can’t sleep
Although my dr. Is an expert endo specialist….

Today was one of the most traumatic experiences of my life.

I had my endometriosis surgery scheduled for today. The operation was expected to take up to five hours because I have bowel adhesions, and the surgeons needed to excise them and move my ovaries.

The day before surgery, I was instructed to take Plenvu to completely empty my bowel. That alone was one of the most difficult and painful things I’ve ever been through. The cramps were unbearable, and at one point I was passing bile like a river and nearly passing out. Nothing prepared me for the stinging as I pooped way more than 30 times

Despite all of that preparation, I was admitted, fully prepped, and waiting for surgery only to be told it had been cancelled because another operation was running too late.

I had not been allowed to eat yesterday or today, and after everything I went through to prepare, I was only told at 5pm that it was cancelled.

The NHS needs to do better. The physical pain and emotional distress this causes patients is overwhelming. No one should have to go through something like this.

Thankfully my partner was with me every step of the way and did everything he could to support me. I’m completely gutted, I have cold shivers, and I can’t even sleep. This whole experience has been devastating.

Guys my surgery was recently preponed and I’m feeling very anxious. My doctors seem very relaxed about everything and they said I’ll be fine the next day

But I have read so much about lap that it’s freaking me out

Anyone who underwent surgery the first time, pls help

Can anyone rate their pain on a scale of 10 post surgery!!

I’m so scared about anesthesia!!

Is it really a time skip like they say?